Published literature
Achieving child-centred care for children and young people with life-limiting and life-threatening conditions-a qualitative interview studyCoombes L, Braybrook D, Roach A, Scott H, Harðardóttir D, Bristowe K, Ellis-Smith C, Bluebond-Langner M, Fraser L, Downing J, Farsides B, Murtagh F, Harding R · Eur J Pediatr · 2022
A novel child-centred core palliative care outcome measure for use in clinical practice and research: findings from a multinational validation studyNamisango E, Murtagh F, Bristowe K, Downing J, Powell R, Atieno M, Sandham M, Ali Z, Meiring M, Mwangi-Powell F, Abbas M, Fraser L, Higginson I, Harding R · Health & Quality of Life Outcomes · 2025
Challenges and Incentives for Integrating Person-Centred Outcome Measures Into Routine Paediatric Palliative Care: Health, Social Care and Commissioner PerspectivesScott H, Coombes L, Braybrook D, Roach A, Harardottir D, Bristowe K, Ellis-Smith C, Chambers L, Bluebond-Langner M, Farsides B, Murtagh F, Harding R · Palliative Medicine · 2022
Cognitive testing of the Children's Palliative Outcome Scale (C-POS) with children, young people and their parents/carersCoombes L, Braybrook D, Hardardottir D, Scott H, Bristowe K, Ellis-Smith C, Fraser L, Downing J, Bluebond-Langner M, Murtagh F, Harding R · Palliative Medicine · 2024
Design and Administration of Patient-Centred Outcome Measures: The Perspectives of Children and Young People with Life-Limiting or Life-Threatening Conditions and Their Family MembersCoombes L, Harðardóttir D, Braybrook D, Roach A, Scott H, Bristowe K, Ellis-Smith C, Downing J, Bluebond-Langner M, Fraser L, Murtagh F, Harding R · Patient · 2023
''If they knew what I thought was important that would help a lot more'': Methods for involving children and young people with life-limiting and life-threatening conditions in development of a paediatric palliative care outcome measureBraybrook D, Coombes L, Roach A, Scott H, Haroardottir D, Bristowe K, Ellis-Smith C, Hills M, Maynard L, Anderson A, Namisango E, Higginson I, Downing J, Bluebond-Langner M, Fraser L, Murtagh F, Harding R · Quality of Life Research · 2022
Influence of multi-party consultations on child involvement in clinical encounters: An observational study of paediatric palliative careEkberg S, Danby S, Pitt E, Ekberg K, Watts J, Weinglass L, Bluebond-Langner M, Langner R, Bradford N, Yates P, Fleming S, Delaney A, Duffield J, Herbert A · Patient Education and Counseling · 2026
Involving Nonspeaking and Speaking Children in Clinical Encounters: An Observational Study of Real-World Clinical EncountersEkberg S, Danby S, Watts J, Weinglass L, Cooke R, Nelson M, Pitt E, Ekberg K, Bluebond-Langner M, Langner R, Bradford N, Yates P, Delaney A, Duffield J, Orr A, Fleming S, Scully M, Ryan S, Herbert A · Journal of paediatrics and child health · 2026
'My life is a mess but I cope': An analysis of the language children and young people use to describe their own life-limiting or life-threatening conditionBristowe K, Braybrook D, Scott H, Coombes L, Harðardóttir D, Roach A, Ellis-Smith C, Bluebond-Langner M, Fraser L, Downing J, Murtagh F, Harding R · Palliat Med · 2024
'My Life Is a Mess but I Cope': An Analysis of the Language Children with Life-limiting and Life Threatening Illnesses Use to Describe their Own ConditionBristowe K, Braybrook D, Scott H, Coombes L, Harardottir D, Roach A, Ellis-Smith C, Fraser L, Downing J, Murtagh F, Harding R · Palliative Medicine · 2023
Patient-centred outcome measure design: the perspectives and preferences of children and young people with life-limiting or life-threatening conditionsHaroardottir D, Coombes L, Braybrook D, Scott H, Roach A, Bristowe K, Ellis-Smith C, Downing J, Bluebond-Langner M, Laddie J, Hills M, Ramsenthaler C, Fraser L, Murtagh F, Harding R · Quality of Life Research · 2023
Towards person-centred quality care for children with life-limiting and life-threatening illness: Self-reported symptoms, concerns and priority outcomes from a multi-country qualitative studyNamisango E, Bristowe K, Murtagh F, Downing J, Powell R, Abas M, Lohfeld L, Ali Z, Atieno M, Haufiku D, Guma S, Luyirika E, Mwangi-Powell F, Higginson I, Harding R · Palliative Medicine · 2020
Use of Patient-Reported Outcomes Measurement Information System Pediatric Measures as Clinical Trial Endpoints: Experience from a Multicenter Pragmatic Trial in Children with Crohn’s DiseaseMiller T, Schuchard J, Carle A, Forrest C, Kappelman M, Adler J, Ammoury R, Bass D, Bass J, Benkov K, Bousvaros A, Boyle B, Cabrera J, Colletti R, Dorsey J, Ebach D, Firestine A, Gulati A, Hoffenberg E, Jester T, Kaplan J, Kugathasan S, Kusek M, Leibowitz I, Linville T, Margolis P, Minar P, Rios Z, Moses J, Palomo P, Pappa H, Pashankar D, Saeed S, Samson C, Sandberg K, Steiner S, Strople J, Sullivan J, Tung J, Wali P · The Journal of Pediatrics · 2021
What are the anticipated benefits, risks, barriers and facilitators to implementing person-centred outcome measures into routine care for children and young people with life-limiting and life-threatening conditions? A qualitative interview study with key stakeholdersScott H, Coombes L, Braybrook D, Hardardottir D, Roach A, Bristowe K, Bluebond-Langner M, Fraser L, Downing J, Farsides B, Murtagh F, Ellis-Smith C, Harding R · Palliative Medicine · 2024
What Constitutes High-Quality Paediatric Palliative Care? A Qualitative Exploration of the Perspectives of Children, Young People, and ParentsBraybrook D, Coombes L, Scott H, Harardottir D, Roach A, Bariuan J, Ellis-Smith C, Downing J, Murtagh F, Bluebond-Langner M, Fraser L, Harding R, Bristowe K · The patient · 2025
What matters to children and families facing advanced cancer? Identification of priority outcomes to improve paediatric palliative care in Turkey and JordanBoufkhed S, Yurdusen S, Alarjeh G, Ahmed F, Alrjoob W, Sengelen M, Cemaloglu M, Aydin B, Kutluk T, Shamieh O, Harding R · Palliative Medicine · 2021
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